Monday, May 27, 2013

It's been well over a month since Wyatt's surgery. I am starting to feel like my self again only now, after two sun-filled weekends at home. According to the experts, this is a 'normal' reaction after an extended period of stress, after a perceived threat (in this case, to a loved one). Despite my profession, I have to keep reminding myself that a low period after a time of intense stress is to be expected. It's a natural reaction, especially when you consider that my [often precarious] work-life balance was tipped dramatically in one direction then quickly pushed back again. After the surgery, I was going along at a pretty good pace too, or so I thought... until I found myself in an empty room, unsure what to do, straining to hear anything over the silence and my own breathing. The sudden absence of a presence, one that had haunted us for over two years, left a void that I had to fill. Over time I did that. I've made it my own. After spending time with my family, after spending time in the garden, I feel better. I feel more like myself; our family life has cautiously settled back into its own rhythm. Wyatt's progress has been a big part of that: his rapid healing, his adaptation, his overcoming of things like sore muscles and wired ribs that feel weird has helped us all maintain some clarity as we assume our 'new normal'. Our post surgical normal. Our brave new world.

The idea of "normal" seems to have became a theme in the time since my last post. I swear, I'm running across examples and discussions about this all over the place. This concept of normal vs broken seems to be a real thing in the DS community (if you can even call it a community any more). When you think about it, it's no wonder really; after thousands of years of looking at those with Down syndrome and those with intellectual disabilities as "less than" or "broken", modern society is struggling to give these ideas up. These concepts are familiar and comforting, like an old blanket. However, it is time to evolve and "put away childish things", as it were. People with intellectual disabilities are here, have value and worth. Different. Equal. Not separate.

I will agree that the extra chromosome gives a lot of unknowns, a lot of
variables. My first, "typical" child was a "What to Expect..." baby.
Every month there would be a
new list of goals, of things he "should be" doing, things he "might be"
doing and things that would be coming up soon. Spoiler: he didn't
follow the lists. Quinn was barely starting to walk at 18 months, but
had the vocabulary of a child much older. He didn't play with toys
conventionally either, preferring to figure out how they worked and then
make some kind of art statement out of them.

What
we've realized with Wyatt is that development is non-linear. It is fluid. He does
not progress along a predictable path towards a readily recognizable
outcome. It may take him months to finally realize that tapping his
spread palm to his chin means "mother", but in a short period of time
can polish off a few skills that took his typical siblings months to
reconcile. Instead of sitting still while he recovered from open heart surgery as he could no longer crawl, he instead adapted and learned to "scoot'. Holy cow is that kid fast.

Even amongst children with DS, there are no set rules. Not so long ago, pediatricians everywhere adopted a series of Down syndrome growth charts, which for chart/graph minded people like pediatricians, seemed to be a good thing. It helped everyone to get over the idea that kids with DS were "poorly" due to their (generally) smaller stature when compared to their more typical peers. These charts are now falling by the way side as not every kid, especially the ones with DS, adheres to a regular growth pattern. None of my kids have, that's for sure. Growth charts are a touchy subject with me anyway as I am the Mom of two preemies. I've found myself shifting from foot to foot with irritation at a number of appointments, as I watch my two obviously thriving children not "measuring up" to what some chart has to say about "healthy growth".

Wyatt, even with his (previously) busted heart, is not broken or deficient. He does look slightly different than other children I guess. Most people that see him or his pictures want to nibble him, so I can only assume that he's a pretty good looking kid (which, as his mother I suspected all along). None of my three look exactly the same... Quinn is currently in a bag-of-antlers stage, with stunning blue eyes that make you want to fall in and drown. He's also in that stage where some of his teeth are loose, some are sticking out at odd angles and the new ones look like they belong to a horse. Zoe has my olive complexion. She has straight hair--which is a sharp contrast to both her brothers and their blonde curls--and soft brown eyes that can go from molten chocolate to granite in seconds. She can also do bridged lateral push ups between the couch and the coffee table. Genetics are a wonderful thing. However, due to some physiological differences, Wyatt is considered to have a "visual disability". It is "visual", as you can see it and therefore--if you talk to a large (ignorant) percentage of the population--get to pass judgement instantly on his abilities by just looking at him. A casual glance at his twin would not reveal that she has a lisp or delays in her speech or hand tremors that often occur with prematurity. However, Wyatt, due to the shape of his eyes and his button nose, perhaps the way he holds his mouth or curls his toes, is immediately "recognizable".

There are no delusions about the future. Wyatt may develop some behavioral problems, that is true. Having been in Mental Health for years, the place where people with "outbursts" of all shapes and sizes end up, I've had my fair share of experience in this area. I also know how many of these come about and how easily many instances can be both exacerbated or prevented. He may not face this, either. He may speak 'clearly' by conventional standards, or not. Perhaps he will not speak at all. Regardless, he will be able to communicate his wants, needs and desires quite well. You will need to possess the willingness to listen. It doesn't take much really, other than an attention span and patience that lasts more than a beat or two. I also won't know until they are grown up whether any of them will have
schizophrenia (as I have two cousins with this), will suffer from
depression, have diabetes or cancer. There are variables with all my kids, just like your genetic code will dictate whether your kids will develop the issues that occur in your family.

I guess, in my mind, that's what really set the "This is Down syndrome" list of illnesses and disorders away for good. Yes, my kid does go to a lot of doctors. So do I, when you think about it... and I consider myself to be a reasonably healthy person. To put it another way, here is a list of things that can "go wrong" if you happen to have Trisomy 21. Here's a list of things that can "go wrong" if you are human:

It's a big list...

Homo sapiens are a diverse bunch, full of colours, shapes, sizes and bodies that ultimately break down, no matter how much we exercise or how organic our produce is. Or how many chromosomes we may or may not have. We are all broken, if that is the criteria you use to determine worth.

I think the sooner that we as a species, realize that all of us have equal value, the sooner we will stop hearing stories like this one, where a hotel in Spain refused to allow children with Down syndrome as they would be "disruptive". We'll stop perpetuating myths that our kids with intellectual disabilities have an unholy attraction to water or wandering; kids without DS can drown and bolt without warning just as easily. I know this, I was that kid. I would routinely wander off, especially in public. My mother can tell you many stories about how I would hide in clothing racks or just get lost, period. My mini-me daughter is shaping up to be the same too, which is going to mean a lot more grey hair in the future (assuming it doesn't just give up and fall out). Everybody wanders and gets confused by their surroundings from time to time. If you don't believe me, watch a security camera in a hospital for a length of time. Trust me, I've seen some things...

Normal, as they say, is simply a setting on the washing machine. When it comes to people, there really is no such thing. We're all bags of quirks and "illness" and here for a very limited time. That includes our members with developmental delays and intellectual disabilities. There is no "less than". There is no broken.

Friday, May 10, 2013

Sunday is Mother's Day. I really wanted to write a funny post for a change... one that was full of the madcap antics of my household. Possibly even some highfalutin' adventure. Hey, it could happen. However, most of what happens in my house lately has fallen into the "you hadda be here" or "TMI" categories. You don't need to know the intricate details of how I can't use the washroom or have a bath or shower in peace, between the hours of 8am and 10pm (give or take an hour on either side). You don't need to know what happens when a toddler on Lasix, a full cup of juice, two oatmeal cookies and an undersize diaper collide.

You don't.
You're welcome.

The reality is, I'm really not feeling very funny these days. Oh sure, we're still laughing, we don't live in a tomb for heaven's sake. However, I'm not feeling uber witty, all light and bouncy and full of one liners. That probably has a lot to do with Wyatt's recent open heart surgery. He's fine, great even. He's done remarkably well and will be the subject of many an update. However, I have to recognize that as a Mother, seeing your child go through that is stressful. So stressful I think, that I can honestly say that Wyatt's surgery date was probably the worst day of my life. I often describe my kids to my childless friends as the walking manifestations of my own heart. That they are too, no matter how mad I get at them for breaking my stuff. To then hand over one of them, to have his own heart cut open and fixed, sewn back up and then handed back... it's the kind of stuff that affects one deeply, totally because of my Momness. My nurseness is all "keep the incision clean and monitor for CHF", but my Mommyness... she's having a bit of a hard go. Despite what I think, despite what my hardass side thinks, it's going to take a while to get over that.

What I am doing between random bouts of productivity is a lot of reflection. My story, as a mother, is just one amongst a billion. I've thought about that. I've thought about a lot of other mothers lately that have also touched my life. My own, obviously, whom I won't talk about as she is now reading this (Hi Mom!) and many, many others that I have met along the way that have gently shaped my reality.

In my early days of nurse-ness, in my first psych job in fact, I met a mother who will stay with me always. I was so new in fact, that I was in the (now enviable) position of being too inexperienced to completely comprehend the potential dangers of my job (yet still managing to scrape by somehow). Later on I would live in fear for a while, as the knowledge of what could happen became very real. As time went on, as experienced has been gained, I am no longer in fear. However, this lady was pretty much one of my first "first break" parents to have a Health Teaching conversation with. I've had that conversation seventy bazillion times since then, with varying results and varying levels of comprehension and acceptance. This evening however, she was listening to every word that I spoke to her, yet still possessing a gaze that was miles away.

It was Sunday evening and we stood at the front desk. She had brought her son back after a weekend pass at their island cottage "where it was safe and he could just run around and scream at trees, y'know?". He was resistive to medication, had refused to take anything other than his sleeping pills all weekend and was so paranoid and delusional that we had become part of the scenario he had built in his head. This son had gone from being a kid with okay grades, played sports and had a pretty little girlfriend who adored him. Now he was demanding that we take the microchips out of his head, that we were the FBI, the gestapo. His parents had hoped that a weekend in a more familiar setting would help "settle him down". She was pretty put together, this Mom. Edgy haircut, smart looking glasses, expensive clothes. She was an educated, successful woman who joked occasionally as she spoke. She was accepting of his illness, yet her eyes spoke of her sadness that this new development had brought on.

A terrified howl and the sound of furniture going over got my feet moving and I ran down the hall, my Doc Martens digging into the carpet. I unconsciously checked for the restraint keys in my lab coat pocket before stepping forward through the crowd of white coats around his bed. I talked him out of his corner, encouraged him to take some medication and stayed with him alone until he had calmed down a bit and promised me that he would try and go to sleep. I caught sight of his mom in the hall as I was picking up the pieces of a broken overbed table. She was out in the hall, half pacing, half lingering to talk to me. Dragging the table with me, she told me of her son, the one she knew, not the sick version that was currently mumbling to himself as the medications started to work. She felt robbed, she said, that this illness had seeped in little by little, hardly noticed until it was raging in front of her. She despaired that her son would never come back to her. I comforted her as much as I could, gave her as much information as I could, but it was obviously not enough. As we parted company that night and I dragged the broken table to the back hallway I knew then that schizophrenia was, as a parent, one of the hardest things to see happen to your child. At the time I was separated from my husband and convinced that children were not for me. I remember thinking that this experience only strengthened my resolve. This would be too much to bear. I ran my french manicured nails through my blonde-on-blonde locks and contemplated the lack of guarantees in life as I sat down to chart.

Since that time, her face, her words come to mind as I talk to parents. I often wonder what happened to that young man and his family. I saw him through the crisis, helped the family as much as I could until he was discharged home. So much has changed since that time however; even the person I was then no longer exists. That much younger person was all about having a good time and going to the gym and spending an hour a day on her hair. Now I'm lucky if I get to run a towel through it before grabbing a scrunchie and makeup is only attempted if time, circumstances and weather permit. Many years later I wish I could reach back through time and speak to this Mom again and talk to her, mother to mother. I would not be able to take her pain away, but I would know how to ease it sooner.

I saw that mother again the other day. Not really, but as I was absentmindedly poking at the monster zit erupting on my chin I caught a glimpse of her in the mirror. Something around the eyes, the way my mouth was set. A weariness. The look of a mother whose resolve has been tested, whose child's life has been endangered, even if only in her mind. She has been through an ordeal, this mother. Unlike those years ago, I know what to say to this woman. I know to show her the future, to look beyond her body's natural reaction to rest, to regroup, to minimize. To be kind to herself and not take too much on. I know what to say now. My only hope is that I listen.

Instead of spending Mother's Day in bed, being surrounded by my family and having breakfast made for me, I will spend it with a group of other mothers. There will be no brunch, flowers or handmade cards. There will be more terrified young men however, along with very sad mothers (and fathers). I will be working this Mother's Day, as many of us Nurses do. If we decide to do a pot luck (or order in as we tend to do on special days), we will combat the sadness by making a sheet a table cloth and eating our delicacies in shifts. It always amazes me, how we create civility out of sterility and chaos. But we do. We will talk about our families and share war stories about other families, other mothers. In this surreal universe that is my life, this makes total sense to me, to explore the facets of "Mother" on Mother's Day, surrounded by mothers, in a break room located in the heart of psychiatry of a large regional hospital.

Mother. We all came into this job woefully unprepared and all of us face the unknown with our children. It is a job that is completely thankless at times. It is a job that comes with infinite happiness. It is a job that can vacillate between the two, mid-sentence. Special needs or not, this job is hard, the hardest thing I have ever done. We wake every morning with a list formulating in our head and retire at night wishing we had gotten more done. It's never as we imagined it. As my daughter walks over with a huge grin, sneezes in my coffee and tries to feed me the plastic container of a Kinder Egg out of a toy basket, I reflect on that: it's never as we imagined it. Thank goodness too, as I never would have imagined how hearing Wyatt laugh without running out of breath would sound, how my chest contracts and my own heart hurts when I see it happening. How an hour long lecture on long division and the digestive system would be music to my ears as I prop my head up and poke absentmindedly at my dinner after a long day at the office. How real and surreal and magical and factual and sad and joyful it can all be. There are still no guarantees, my then-me still got that right. My now-me knows that Motherhood is a journey, one that mainly resides in the intangible.

Happy Mother's Day to all mothers everywhere. May your day be reasonably restful and stain-resistant.

Wednesday, May 1, 2013

Every month I compile a list of the stories I post on Down Wit Dat's Facebook page. They are stories of activism, of inclusion, of advocacy, of education, of hope and awareness. April was a busy month, including the ongoing efforts of the Down syndrome
community to demand justice for Robert Ethan Saylor and to illuminate an
ongoing bias towards those with Trisomy 21.

Support
flows for woman with Down syndrome mocked by radio DJ - See more at:
http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf

Support
flows for woman with Down syndrome mocked by radio DJ - See more at:
http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf

Support
flows for woman with Down syndrome mocked by radio DJ - See more at:
http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf

Support
flows for woman with Down syndrome mocked by radio DJ - See more at:
http://www.dispatch.com/content/stories/local/2013/01/31/support-flows-for-woman-mocked-by-radio-dj.html#sthash.ZV10BbV0.dpuf

What You Have to Say About Down Wit Dat:

"Just wanted to let you know how much I admire you. I know you fight a lot of demons, both yours and for others, yet you still maintain that fantastic sense of humor, and more importantly, fairness. You are a constant source of light in the darkness, because you are beautiful inside and out..." - S. R.

"...Wonderfully written and one thing Jen does with her writing is make you stop and think ...and think hard." - J. Toner

"Before I had my little L., I never knew anyone with down syndrome, your page has given me so much hope for my little boy, the people who post pictures of their children and the things that you post are wonderful, its made it easier for me to understand and get used to, thank you, keep doing what your doing with the good work, much appreciation. X." - L. Barnes

"Your post (and the posts of others that you linked to) actually made me tear up a little. Growing up with a brother with Downs, I actually got into fist-fights because of "that word". Hearing it used as a derisive and insulting term by people who should know better (or by those who do know better but are just looking for attention in the case of Coulter) is NEVER ok. Thank you for speaking out.﻿" - I. Thomas

"I love these history posts. This is a TON of work on your part, thank you so much!" --N. Haegele

"I don't have any children yet, and I'm not sure how I ended up reading your blog. But it is absolutely inspirational. I'm so glad Wyatt was born into your family where I am sure he can live a happy fulfilled life." --artandtourism

"Above all, Jen is an amazing mother. She is honest and real, and inspires me everyday to love my "typical" child the way he needs to be loved, respect him as a person, and not even for one single second take him, or anything for granted. She allows me to venture into her life, and care about her and her family. What dear little children she has blessed the world with. She is planting seeds, nurturing and growing her family (and extended reader family) into people who will make this world a better place. Why aren't we all more like that?" —Penny

"Jen and her family have an amazing story and mission. Jen's writing reflects the difficult and triumphant steps of life with a special needs child; twins at that, and a older sibling. Thank you for sharing your families' strength with the on-line community."--S.B.

"I think I'm a little bit in love with Jen, and if she lived down the road I might just be a blogging groupie, not because I'm a crazy stalker I hasten to add, but because the easy warmth in which she tells her story convinces you that you are simply having an easy chat with your best friend. She has a subtle wit and craft to her blog posts, they are not just splurges of untamed emotion. This enables her to not only tell her story with honesty and in an enjoyable way, she also manages to impart a message without coming across as patronising or preaching. It's a rare gift for a blog about special needs."— Renata

"Having a child with special needs can be an isolating experience -- even more so when you live half a world away from your friends and family. Due to this, the internet became my primary source of support and camaraderie with other parents in similar situations. I read dozens, if not hundreds, of blogs about being the parent of a child with T21, and though most had positive points, for the most part they just didn't 'speak' to me and what I was feeling. Then came Jen and 'Down Wit Dat'. Suddenly, I heard a voice that was in harmony with the things I was feeling and going through. Her writing is so brutally honest, while at the same time insightful and informative...not to mention FUNNY! If there has been one thing I've learned on this journey, it's the importance of keeping your sense of humour -- even when you seem to be losing your sanity. Thank you so much, Jen, for putting out there the human, REAL side of our special club -- and being a voice for those of us that are so often unheard." — Dee

"I love the honesty, Jen never glosses over the difficulties and never fails to celebrate the victories. My children are not special needs but I can always find commonalities and it has opened my eyes to the fact that people with Down syndrome are not as different from the rest of us as they might initially appear. Since I've known Jen and been reading her blog my attitudes toward respect, and what it means, have changed. "The "r" word" particularly hit home as I had been ignorant to the effects of the use of that word. I do my best to help spread the message."--Susanne

"I have been following this blog for months now. I have nothing but positive thoughts and warm fizzy feelings when reading it. My only regret is not having found this blog when it was originally started. One piece that particularly sticks out to me, was the blog about the "r" word. I don't think I have actually cried so much reading a blog that wasn't about someone dying. I printed it off and shared it with many friends, because Jen is right. She struck a nerve and made me realize that not only myself, but there are many others around me that use that word without realizing how powerful it really is. Down Wit Dat is a blog full of enthusiasm, awareness, whole heartedness, truth, encouragement, laughter, but best of all, its full of Jen, FAMILY, and a look at what having a special needs child is about. Keep writing. You're amazing!" —B. Nason

"I love Jen's take on the special hand that she and her family have been dealt. I especially love that while she shares all her son's small victories she doesn't gloss over the challenges that she and her family face. The best thing I love about Jen and her blog is that she is constant supporter of the rights and challenges of kids and adults with Down Syndrome. She has provide a lot of insight that has opened my eyes and many others. I especially loved her blog about the "r" word. It opened dialogue with my family, friends and groups that I am a part; and I am much more conscientious about the words I used to describe people"--V. Saenz-Brown

"Jen's blog is wonderful! While I do not have a down child, as a mom, I relate to the everyday struggles of just doing your best, of the struggles, the heartaches, the joys of everyday life. Jen writes in a positive and uplifting style with just the right doses of humor thrown. Great read!" —Terra

"This blog is written from the parents perspective, which is important. Jen's story is not unique, but the way she tells it, with humor and honesty is wonderfully refreshing. It brings a real perspective that people can understand and relate to, and is a resource for parents of not just Down Syndrome kids but of all kids to know that life may not be perfect but that everyone has a unique way of dealing with it."—Kimberly

"I too am the mother of a down child. It gives me great giggles, sorrow, and camaraderie to read her blog daily. I find it makes life's little challenges more bearable. She is honest, upfront and a wealth of information. And I think her attitude is one many of us share and embrace. Even if she does not win, she is a huge winner already in my book. Lots of luck and love to her and her amazing family." —L.Grassa

"I love Down Wit Dat because Jen is so honest about her experience as a parent. Jen is not afraid to write about her vulnerability, anger, fear, joy, or love. She's an amazing writer! Jen's description of her blog is so bang on! I laugh and I cry, sometimes simultaneously."—Marla

"I am currently a Disability Services major in college and for my one class we had to find a blog by a parent who has a child with a disability to follow and discuss with the class every week. I have been following your blog for a couple weeks now and I get so excited to talk about little Wyatt and what an amazing family he has and the struggles and victories that you all over come daily! Someday down the road I hope to have children and if I am granted a special needs child I can only hope that I can handle everything that comes my way as positive and good as you do! You are doing an amazing job and are a great mother! Thank you so much for sharing your story!"--Anonymous

"Your blog is incredibly inspiring. I have laughed out loud, been in tears, and everything in between! it's fabulous." -HDSSG

"If you haven't been told today... you're awesome." - Trevor

"Wyatt is fortunate to have such a mom." - Anonymous

"...Thanks for your honesty and insightful points. It helps put our own thoughts into words to pass on when we encounter the same situations." - P

"I am enjoying reading your blog. I taught preschool/education for about 35 yrs and most of it was spent in CA where there is encouraged mainstreaming. I enjoyed having special needs kids...they bring a special and fun element into the classroom! I also had a young man with Downs who was my class helper at one time...he was so much fun! I wish people knew these things....as there are preconceived ideas..." - Jenny

"I remember speaking with you when you found out about the possibility of one of the babies having some abnormalities, and you did not know how you would handle it. My response was, once the situation arises you will find ways to deal with it. I must say, you have done so well with your children, especially with Wyatt. You are not ashamed to embraced what God has blessed you with, and to share your new found info with others who might be less fortunate, and to those who might be less accepting. I am sure you have empowered many people who are in the same situation and need a little love and support. You've turned negatives into positives. I must say you are an awesome mom. Keep up the good work, it not going unnoticed." - K. Garwood

"... I just started reading from the beginning... I am intrigued. It is so incredibly well written with so much love. There were parts I would start to cry. I felt your sadness and your happiness and your passion. These children are so lucky to have you as their mother. I can't wait to read the rest of it and get caught up!!! Thank you so much for sharing your life with us! ?" - M. Laine

"Just had a few minutes to read more of the blog and I must say I LOVE it! I could not agree more that so much of the info I found as a new mom was SO depressing. I didn't jump for joy with the dex of T21 but it wasn't anything I could change so we accepted -and started to read everything we could get our hands on. Can't wait to read more..." - E. Chesnut

"I wanted to say I love your blog. You write so honestly... Thank you for writing so candidly." - M. Antushevich

"Found your page completely randomly while trying to connect with other wine blogs like myself. I do not have any kids or know anyone with Down Syndrome but your blog really captivated me. I guess that is how good it is. Keep up the good work :) " - The Frugal Tasters

"There are going to be many times when i say how courageous you are! I do not think it can be said enough, you take YOUR time to educate and inform and rid parents of their fears! THANK YOU THANK YOU THANK YOU . I wish my kids were old enough to read and understand! Hopefully one day the maturity level will be there so they can and come to appreciate life more not for the big things but for the everyday moments that will mean more than the big ones EVER will! ?" - C. Cochran

"I, too have a son name Wyatt who happens to have an extra 21st! He was born 2/15/11! Thanks for sharing your story. We're in good company : ). " - R. Scheerer

"My daughter will be 8 in Nov. Unfortunately, my parents I felt were ashamed of my daughter. If only they had gotten to know her before they passed on....." - A. Welsh

"I always enjoy your straight forward, tell it like it is posts. People need this information. They need to know how their ignorant, or often well intentioned but uninformed, words and actions are frustrating, annoying and/or hurtful." - Shayna